Tag Archives: SEER

The Biggest Challenges Facing Metastatic Breast Cancer Research

Kudos to Julia Belluz, Brad Plumer, and Brian Resnick for their wonderful July 2016 Vox article, “The 7 Biggest Problems Facing Scientists According to 270 Scientists.” As one of my nephews would say, “Nailed it!”

The authors surveyed  270 scientists all over the world, including graduate students, senior professors, laboratory heads, and Fields Medalists. In a nutshell, they learned  that scientists’ success often isn’t measured by the quality of their questions or the rigor of their methods. It’s instead measured by how much grant money they win, the number of studies they publish, and how they spin their findings to appeal to the public.

Here are some of the seven points that really resonated with me, a woman living with Stage IV breast cancer who is relying on research to help me–or failing that–my family, friends and well, everyone. Please note that these points as I am relaying them are in reverse order of importance.

WHERE ARE THE CELEBRITY MOLECULAR BIOLOGISTS? Point No. 6  hit home for me: Science is Poorly Communicated to the Public. “If I could change one thing about science, I would change the way it is communicated to the public by scientists, by journalists, and by celebrities,” writes Clare Malone, a postdoctoral researcher in a cancer genetics lab at Brigham and Women’s Hospital.

Amen! The general public has no idea that breast cancer represents something that went wrong at the cellular level. It is not a punishment for eating too much sugar or too little kale. It is not God’s way of sending you a wake-up call. It means that something has gone wrong with some of your 30 trillion cells and they are growing out of control. The onset and progression of cancer is due to multiple dysregulated proteins and cellular pathways.

But according to musician and amateur molecular biologist Melissa Etheridge, “Cancer is just a symptom of our bodies being out of balance and the cure is to understand health. It’s to understand our bodies and our spirits—our souls—better. That’s the cure.”

 Melissa Etheridge was diagnosed with Stage 2 breast cancer in 2004. She had a lumpectomy, 15 lymph nodes removed and then  five rounds of chemotherapy and radiation. Apparently this is the basis of her expertise.

In her spare time, Etheridge dabbles in genetics, too.  In a 2015 she told AARP: “I have the BRCA2 gene but don’t encourage women to get tested. Genes can be turned on and off. I turned my gene on with my very poor diet.”

The article drew the ire of many, including a non-profit that advocates for those with hereditary breast and ovarian cancers. “Everyone is born with two copies of both the BRCA1 and BRCA2 genes, which play essential roles in preventing cancer,” wrote Sue Friedman, executive director and founder of FORCE. ” Individuals born with a change or mutation in one of these genes bear a higher lifetime risk of breast, ovarian, and other cancers than those without a mutation not because the gene is ‘turned on’ but because they lack a working copy of one of the genes involved in preventing cancer development.

Attention journalists–some celebrities are knowledgeable about their conditions–but please give some thought as to how these influential figures’ words and actions will be received. Angela Jolie, for example, seems well-informed about why her personal family history made a prophylactic mastectomy and oophorectomy a logical choice–for HER. However, please take the time to point out that MOST cancer is NOT hereditary–90 percent of ALL cancers  are considered sporadic, meaning they just happen. So in other words, the vast majority of us–in looks or genes–are not like Angela Jolie at all.

Another plea: Please remember those who won’t “kick cancer’s ass.” It’s not like we did something wrong or we didn’t try hard enough or we blew off doctors’ appointments. We are living with a chronic, progressive and ultimately fatal disease. Don’t treat us like losers or pretend we don’t exist. Think outside your pink ribbon expectations.  Breast cancer is second only to heart disease and lung cancer as the leading cause of death in women. Where are your lung cancer special sections? Pancreatic cancer is a devastating diagnosis–there is no early detection for this disease. Like ovarian cancer, it is a silent killer–where are those stories?

As someone living with the fatal form of breast cancer, I am so tired of self-appointed experts–celebrity and other wise–expounding upon a disease that they know little about. I am a member of United Airline’s MileagePlus program. I have been a passenger on many flights.  Amazingly, I have no insights on the science behind keeping a plane aloft, how to fly a plane or the latest pilot union grievances. Journalists: When interviewing a celebrity, please ask yourself, “What makes this person an expert? What is their understanding of basic human biology let alone the disease in question?”

MUST BE THE MONEY–the authors noted that US academic researchers need outside grants to pay for their salaries, assistants, and lab costs.  University funding is paltry–many faculty are expected to cover at least 75 percent of their salaries with grant money. Grants typically expire after three years–far too short a time to supply the kind of research needed for meaningful results in studying metastatic breast cancer. Research can take decades.

Our federal government is the largest source of cancer research funding and as Vox reports, “that pool of money has been plateauing for years, while young scientists enter the workforce at a faster rate than older scientists retire.” You can bash all the breast cancer non-profits all you want for funding more “awareness” than research. But where are the protests, the outrage over the federal government slashing research funding? The Moonshot is all well and good, but it can’t eradicate YEARS of federal penny-pinching and indifference when it comes to research. As Belluz, Plumer and Resnick observe:

Take the National Institutes of Health, a major funding source. Its budget rose at a fast clip through the 1990s, stalled in the 2000s, and then dipped with sequestration budget cuts in 2013. All the while, rising costs for conducting science meant that each NIH dollar purchased less and less. Last year, Congress approved the biggest NIH spending hike in a decade. But it won’t erase the shortfall.

The consequences are striking: In 2000, more than 30 percent of NIH grant applications got approved. Today, it’s closer to 17 percent. “It’s because of what’s happened in the last 12 years that young scientists in particular are feeling such a squeeze,” NIH Director Francis Collins said at the Milken Global Conference in May.

 James Watson was 25 years old when he co-discovered the double helix structure of DNA in 1953. Watson benefited greatly from the work and mentorship of older colleagues. Where are the James Watsons, Frances Cricks and Rosalind Franklins of 2016? Sadly, they are probably going into more lucrative fields–and they probably aren’t staying the US, either.

There is actually a non-partisan group dedicated to  “seeking the immediate restoration of funding for NIH followed by steady, predictable budget support in the future to enhance lifesaving research for patients around the world.” Medical research in the United States is in crisis according to ACT for NIH. “Adjusted for inflation, NIH receives nearly 19 percent less funding than it did in 2003. Because of this decrease in funding, NIH must reject research proposals that could lead to future discoveries of cures and treatments for cancer, Alzheimer’s, heart disease, stroke, diabetes, and other diseases. Our brightest young scientists are turning to other careers, and  other countries now threaten our global leadership in biomedical research.”

Again, where is the groundswell of outrage?

Global SpendingPUBLISH OR PERISH–Researchers are under enormous pressure to publish–unfortunately, the need to amass credentials can sometimes lead to the publication for the sake of publication–we end up with white-bread-and-mayonaisse studies that will ultimately help no one–except the authors’ careers. Metastatic breast cancer research creeps along at a tortoise-like pace–meanwhile these MBC researchers are being lapped by hares, eager to advance their careers. Sometimes researchers–perhaps even unconsciously–may create studies that are heavy on hype but slim on actual meaningful results. Says Vox:

The consequences are staggering. An estimated $200 billion — or the equivalent of 85 percent of global spending on research — is routinely wasted on poorly designed and redundant studies, according to meta-researchers who have analyzed inefficiencies in research. We know that as much as 30 percent of the most influential original medical research papers later turn out to be wrong or exaggerated.

The Vox article does not specifically address metastatic breast cancer research funding. But the Metastatic Breast Cancer Alliance (MBCA) has identified the following roadblocks to MBC research:

 Funding

  • MBC researc is  underfunded. MBC-focused research made up only 7% of the $15-billion invested in breast cancer research from 2000 to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom. Specific scientific areas are understudied. The field of MBC research is relatively small. 
  • Overall cancer research is also underfunded (0.1% of the Federal budget.) Other areas receive more funding including the military, farm subsidies and education.

Matched Tissue Samples

  • To advance MBC research, better access to tissue is needed, including the primary tumor and interval blood samples collected and banked between the primary and development of the recurrent metastatic tumor.
  • MBC tissue from different populations needs to be studied (e.g., MBC in younger, premenopausal women vs. MBC in older women).

Model Systems

  • The previously available laboratory models for MBC research were discouraging but in 2013 and 2014, several laboratories have demonstrated interesting MBC models.
  • MBC models need to be validated and standardized across laboratories.

Academic-Initiated Clinical Trials

  • Academics have not focused enough on MBC (in basic research, clinical trials or cooperative groups), although focus is rapidly shifting to MBC as a priority
  • MBC research is complicated, costly and time-consuming (e.g., early breast cancer studies in animals can be two or three months; MBC animal studies can take up to 9 months to run a single set of animal experiments).
  • Lack of academic involvement has resulted in MBC trials being led by the pharmaceutical industry and business interests, including correlative science studies.

Epidemiology

  • We need to better understand the epidemiology of MBC. How many patients have a recurrence? How many of these represent a metastatic recurrence? What are their treatments and responses? How long do they survive? We don’t know because our national cancer registry (SEER) does not track metastatic breast cancer recurrence–we only have incidence, initial treatment and mortality data. Very few people present with MBC as I did (10% or less). Unfortunately, this isn’t the  first breast cancer rodeo for most people with a Stage IV diagnosis. But we don’t have recurrence statistics. You cannot manage what you do not measure.

 

I was diagnosed with MBC in 2009. Over that time, US cancer research funding

I was diagnosed with MBC in 2009. Over that time, US  cancer research funding dropped by about 20 percent. Come on! We’re counting on you, Congress! Give NIH the support it needs!

I am proud to be a board member for the Metastatic Breast Cancer Network (MBNC). We are a founding member of  the Metastatic Breast Cancer Alliance (MBCA). The Alliance is led by advocates and, since forming with 15 groups in October 2013, has grown to be the largest breast cancer alliance in the U.S. with more than 40 of the leading cancer charities, advocacy groups and individuals and pharmaceutical industry partners represented. The Alliance is working to address all of the above questions. This work is hardly glamorous–there are many meetings, conference calls, committee work and countless hours spent writing and reviewing documents and other tasks. Most members of the Alliance are busy with their regular job duties–as someone living with the disease, I am beyond grateful for their efforts. As you can tell from the Vox article, we have our work cut out for us.  It’s not easy, but we are making a difference and will continue to do so!

 

 

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What have we learned about Metastatic Breast Cancer, Charlie Brown?

Did-You-Know-Logo-SmallI am coming up on my fifth year of living with metastatic breast cancer. I am fortunate–I started with a low volume of bone mets and five years later my disease has remained fairly indolent. Not everyone is so lucky–and believe me, it is only luck. It isn’t like I tried harder or did anything special–I was just “lucky” enough to have a “kind” of breast cancer (ER/PR+; HER2-) and bone-only disease that has been fairly low key. I try not to take this for granted.

As I think back to what I knew about breast cancer in 2009, I am embarrassed. I really didn’t know anything. I remember puzzling out the facts of my case–as though I was in high school muddling through my Spanish homework–constantly stopping to look up words  and rereading everything. N0w I like to think I have a basic fluency in breast cancer, but I also realize there is so much I don’t know.

When I was first diagnosed with metastatic breast cancer, I wanted to set the world on fire. I think I have calmed down a little bit. I hope I have become more focused.

Prior to my own diagnosis, I thought of breast cancer as one disease. I didn’t realize that the absence or presence of cell receptors--as determined by one’s pathology report–guide treatment as does HER2 status. (“The  tissue is the issue,” as my friend Marnie says.) Tumor characteristics ultimately determine what “kind” of breast cancer one has.

Most breast cancer can be categorized as follows:

  • ER/PR+; HER2- (accounts for 65% of breast cancer cases)
  • ER/PR+; HER2+ (accounts for 20%  of breast cancer cases)
  • ER/PR-; HER2-. (accounts for 15%  of breast cancer cases)

Update: A couple of readers with ER-/PR+ breast cancer noted that the above is a bit of an oversimplification.  Here is a further breakdown courtesy of BreastCancer.org :

  • ER+: About 80% of breast cancers are estrogen-receptor positive.
  • ER+/PR+: About 65% of estrogen-receptor-positive breast cancers are also progesterone-receptor-positive. This means that the cells have receptors for both hormones, which could be supporting the growth of the breast cancer.
  • ER+/PR-: About 13% of breast cancers are estrogen-receptor-positive and progesterone-receptor-negative. This means that estrogen, but not progesterone, may be supporting the growth and spread of the cancer cells.
  • ER-/PR+: About 2% of breast cancers are estrogen-receptor-negative and progesterone-receptor-positive. This means that the hormone progesterone is likely to support the growth of this cancer. Only a small number of breast cancers test negative for estrogen receptors but positive for progesterone receptors.
  • ER-/PR-: If the breast cancer cells do not have receptors for either hormone, the cancer is considered estrogen-receptor-negative and progesterone-receptor-negative (or “hormone-receptor-negative”). About 25% of breast cancers fit into this category.
  • HER2+: In about 25% of breast cancers,the HER2 gene doesn’t work correctly and makes too many copies of itself ( HER2 gene amplification). All these extra HER2 genes tell breast cells to make too many HER2 receptors (HER2 protein overexpression).

Also: If you are reading scientific papers, it’s helpful to know that researchers typically  divide breast cancer into four major molecular subtypes: Luminal A, Luminal B,  Triple negative/basal-like and HER2 type. Read a detailed explanation here.

Inflammatory breast cancer (IBC), the kind my mom had, refers to an unusual presentation–there’s no lump, the disease is generally found at Stage 3 or Stage 4. In general, IBC is first treated with chemo, followed by surgery and then radiation. Hormone receptor and HER2 status guides treatment–someone with IBC could have ER/PR+ HER2- breast cancer, for example.

I knew invasive ductal carcinoma (IDC)  (starts in ducts)  and is the most prevalent kind–it accounts for 50 to 75% of all invasive breast cancers. Invasive lobular carcinoma (ILC) (starts in milk glands, aka lobules)  is the next most common type, making up about 10 to 15% of all invasive breast cancers.  ILC generally does not have “lumps” like you’d find with IDC. Instead, ILC grows as sheets of cancerous cells–therefore it is harder to find via mammograms or self exam. With ILC, for any given stage or grade, the prognosis is similar to that of IDC. The pattern of metastases is slightly different vs. IDC–lobular carcinoma can metastasize to unusual sites, including the gastrointestinal tract, peritoneum, and adnexa (refers to uterus/ovary).  Invasive lobular carcinoma is more likely to occur in both breasts compared with other types of breast cancer. ILC tends to occur later in life than IDC — the early 60s as opposed to the mid- to late 50s.

I knew that breast cancer had stages and that Stage 4 wasn’t good. I didn’t realize that no one dies from early stage breast cancer–but that 20 to 30 percent of those with early stage breast cancer will go on to have a metastatic recurrence.

I did not know that a de novo presentation–someone who is metastatic from first diagnosis, is the exception rather than the rule. About 90% of those with metastatic breast cancer were previously treated for breast cancer; only 10% of us are metastatic from the start.

I did not realize that our US cancer registry does NOT track breast cancer recurrence–even though that is how most people join the metastatic breast cancer ranks. The NCI and SEER databases record only incidence, initial treatment and mortality data.  What happens in between — in terms of recurrence and the exact number of people living with metastatic breast cancer — is undocumented. As Musa Mayer says, ““It is as if these metastatic [people]  are invisible, that they literally don’t count. And when we don’t count people’s needs, we can’t provide or plan for them.”

I did not know breast cancer could spread to your bones, liver, lungs or brain. I knew it was bad if it spread beyond your lymph nodes.

I did not know that having the “worst” kind of breast cancer doesn’t necessarily mean you will have chemo right away. I assumed ALL cancer patients had chemo.  In my case, I will not have chemo until all of  the less toxic options have been tried first. This is both because of my cancer’s characteristics ( ER/PR+; HER2-);  and because my cancer remains under good control. Someone with triple-negative breast cancer can’t use  the anti-hormonal drugs (Tamoxfin; Femara, etc) that I do–their cancer would not respond (because it lack the necessary cell recpeptors).

I did not know having metastatic breast cancer means you are a patient for life. Or that the average patient may receive eight or 10 different treatment regimens in sequence. When one drug fails, you move on to the next one. Most people with MBC see their oncologist every month. If  the cancer is under good control, these appointments might be less frequent. But for most it is at least a monthly visit.

I did not know every three or four months I would have scans to see how well or  if my treatment was working. This is anxiety provoking and hard to understand if you have never experienced it.

I didn’t know my scan results could be categorized as No Evidence of Disease (NED), Stable (nothing got bigger or smaller, everything stayed the same); or Progression. I have never been NED but I have been stable, which is good, too.

I did not know that in some cases, people can live with metastatic breast cancer for a long time. I assumed everyone with metastatic breast cancer immediately got really sick and soon succumbed to the disease. While that does happen to some people, it is not universally true. Prognosis depends on many factors, including disease subtype and tempo.

I knew that not having children increases one’s risk for breast cancer, probably because of the unopposed flow of estrogen. I didn’t realize HAVING children increases a woman’s risk for breast cancer for about 10 years after giving birth. I would be willing to bet many women’s doctors either don’t know this or assume that this is a rare occurrence.

I assumed that being diagnosed with metastatic breast cancer at age 43 put me on the younger end of the MBC spectrum. I have sadly discovered this is not the case. I have met women in their 20s with metastatic breast cancer. While it is true that breast cancer is a disease of aging, I think members of the general public would be shocked to hear from some of these young people. Anecdotally, my experience is that there quite a few young women with MBC–too many, in any case.

I did not know that although breast cancer is diagnosed in far more white women, black women are far more likely to die of the disease.

I knew that men could get breast cancer but I  assumed this hardly ever happened. I have met (in person and online) at least five men with metastatic breast cancer. I am pretty sure these men and their families take scant comfort in the “rare” categorization.

I assumed that if one needed financial aid, one could merely call upon one of  the well-known cancer associations or national breast cancer groups. (Let me stress I am fortunate that I have not had to seek financial aid, but I know many who have.) I have learned that few national groups disburse funds. Typically one has to get help  from a local chapter or affiliate or community group and once those funds are gone for the year that’s it. I have learned most aid is fairly modest–getting help will require applying to many different sources.

I did not realize how poorly funded ALL metastatic cancer research is.

I did not know that a  drug that PREVENTS metastasis may not SHRINK a large, refractory tumor. It has a different mechanism of action that is NOT picked up by the clinical trial system. I did not realize some of our best metastatic researchers are advocating for a new approach to clinical trials.

I did not realize that most Breast Cancer Awareness Month coverage focuses almost exclusively on those with early stage disease. People are either afraid of our reality or prefer to ignore it in favor of  “feel-good” stories. Of course, we’ve also seen the other extreme–someone assuming ALL people living with MBC are on their deathbeds, which isn’t necessarily true either.

I did not know the  incidence of stage IV breast cancer—the cancer that is lethal—has stayed about the same; screening and improved treatment has not changed this.

I did not know breast cancer kills 40,000 annually in the US and half a million worldwide. Breast cancer remains the second leading cause of cancer death for women in the US, and it is the leading cause of cancer death for women globally.

Most of all, I did not know that there was so much that I did not know!

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NCI: 6 Easy Ways to Improve MBC Recordkeeping

As previously noted, definitive  metastatic breast cancer numbers are elusive. How many people in the U.S. currently have MBC?  Pundits cite numbers ranging from 155,000 to 160,000. But this is a number arrived at by shaking the statistical equivalent of a Magic-8 ball that responds to every query with “Reply hazy, try again” or “Ask again later.”

NCI and SEER database record only incidenceinitial treatment and mortality data. What happens in between? Your guess is as good as mine—or that of NCI and SEER.

Patients are not followed for subsequent medical outcomes. Neither the SEER cancer registries nor any other population-based cancer registry system collects information on disease recurrences. 

“There has been interest in tracking recurrence but given the degree of cost, time and effort to collect accurate incidence information, the capability to track recurrence for breast cancer and over 100 other types of cancer would require a considerable additional commitment of time and resources,” an NCI media spokesperson said. “Due to the current fiscal climate, expansion of our registry systems is unlikely. Should our fiscal situation change both nationally and at the state level — since states have the legislative authority for cancer being a reportable disease — tracking recurrence is certainly an item that could be considered.”

Let’s review each of these potential hurdles.

Objection No. 1: Tracking recurrence is too costly.

Response: Have you learned NOTHING from working in DC, Grasshopper?

If you’ve got the juice, you  can get the dough. Heck, the Department of Defense Breast Cancer Research Project is working with NBCC to the tune of $150 million.

Suggestion No. 1: Reposition “tracking recurrence” as “miscellaneous recovery expenses” thus qualifying for American Recovery and Reinvestment Act funds.

Suggestion No. 2: Call out Dr. Susan Love’s Army of Women. She’s already  got about 360,000 recruits. Tell her you want a few thousand volunteers to form the MBC National Guard. One weekend a month, the Pink Berets will compile MBC recurrence stats. Bonus: The Guard serves both state and federal governments–they’ve got the legislative authority angle covered.

Suggestion No. 3: Get in touch with Harry Connick Jr., dreamboat and star of “Living Proof.” Connick portrayed Dr. Dennis Slamon, key developer of Herceptin.  The eight-year effort was made possible by  the Revlon/UCLA Women’s Cancer Research Program. (Thank you, Ron Perelman!)  Herceptin  is now available to women with metastatic breast cancer worldwide and has significantly increased the survival rate for over one-third of women diagnosed with the most aggressive forms of cancer. Maybe Harry has Perelman’s number!

Objection No. 2: It will take too much time.

Suggestion No. 4: Call AARP! Cancer is a disease of aging. AARP has 35.7 million members–most of them are spending vast amounts of time tatting or cleaning their swimming pools. I am sure they would LOVE to help out! Bonus: If you are over 50, AARP already knows who and where you are.  All NCI needs to do is add a couple of cancer questions to AARP’s direct mail pieces.

Suggestion No. 5: Rembember that time is but a mental distension.  St. Augustine reminds us that the past has ceased to be, the future is not yet, and only the present exists, but the present moment cannot have any duration.

Objection No. 3: It will take too much effort and additional resources.

Suggestion No. 6: Get a gimmick! Whatever you do, don’t use any icky words like “metastatic” or “breast” or  “cancer.” Instead, wrap your mission in a warm and fuzzy blanket. For example, don’t say “NCI wants to do something about the unknown number of men and women in the U.S. living with MBC because 45,000 people, including wives, mothers, daughters, sisters, nieces and grandmothers will die from MBC this year.” Go with something like “NCI: Official Sponsor of Fewer Funerals.” You could then invite celebrities to record special versions of your theme song: “Stayin’ Alive.” 

NCI, you know I’m just busting your chops. Thank you for the 750 active clinical trials you’re funding for metastatic breast cancer. And it’s awesome that we  have 10 SPOREs — the Specialized Programs of Research Excellence — a cornerstone of NCI’s efforts to promote collaborative, interdisciplinary translational cancer research.

But when it comes to a comprehensive MBC database, C’mon man!

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Why Are You Doing This?

My mom had inflammatory breast cancer. She died in 1983.

The other night I participated in a free WEGO Health webinar: “Navigating Your Health Narrative.” Lisa Emrich, (MS and RA); and Jenni Prokopy, fibromyalgia; and WEGO’s Amanda Dolan offered tips for better health blogging. One basic question any health blogger should ask is “Why am I doing this?”

To paraphrase George Mallory: Because I am here.

Recently a schoolmate posted our first grade class portrait on Facebook. As I studied the faces, distant memories drifted back: Tom’s theft of my Husky red pencil; Scott’s thwarted attempt to cheat on a test and Fred’s pre-luncheon ritual of sitting on his daily baloney sandwich prior to unwrapping it.

What would they remember about me? Probably that I seldom spoke. I was very shy, a situation compounded by being one of three children born in the same year. (I have a twin brother and one who is not quite a year older.)

I used to have a defaced picture of The Haymarket Riot from my sister’s history book. Her friend replaced “Haymarket Riot” with “The O’Brien Family at Dinner Time.” It wasn’t far off the mark. Dinners at our house were raucous gatherings, with everyone competing for their share of attention and food. (Not necessarily in that order.)

Since two of my five brothers were in my class, I had no school news to impart–they always beat me to it. Most of the time I just enjoyed listening to everyone else. I was in awe of my older brothers and my sister. They were bigger, smarter and burdened with the task of setting good examples.

As a World War II and Korean vet, my father was old school all the way. In the early 1970s, hippies were still commonplace. So we heard a lot of anti-mope rants. (“Mope,” “dolt” and “chowderhead” formed my father’s great triumvirate of insults.)

Occasionally, my father would solicit my opinion. Inevitably, my twin, Kevin, would respond for me. “Do you mind?” my father would say, shushing him and signaling for general silence. “I am attempting to talk to your sister. Now, what do you have to say, Kathy?”

I was embarrassed to be singled out. I spoke softly and briefly. At school this often prompted the teacher to say: “Class, could anyone hear that? I didn’t think so. Now let’s hear that again, Kathy, and this time speak up.”

I was quiet like my mother but certainly not as self-effacing. If I was modest it was only because I was too timid to toot my own horn. In spirit, if not in deed, I was like my father–a bit of an intellectual show-off.

“It amused her that our ways were quite opposite,” my father wrote shortly after my mother died. “When I did [something] it would be followed by a detailed commentary on the difficulties of the task and the discomforts I had endured and the magnitude of what I had accomplished and its lasting value.”

If my father painted the back door he would tell my mother it would probably cause an immediate rise in neighborhood property values and make the door itself a place of pilgrimage for connoisseurs of well-painted doors who would come from afar to admire the genius of its brushwork.

“At such times the fond patient eye would fall upon me with a satirical look,” my father recalled. “Puffing out her cheeks to simulate the contours of the Irish face as it pleased her to display them, she would frown importantly and march up and down pointing to herself. My venture into pomposity and egotism would end, like so many of its predecessors, in delighted laughter.”

My mother was diagnosed with inflammatory breast cancer (IBC) in 1981. IBC accounts for between 1 to 5 percent of all U.S. breast cancer cases–NIH classifies it as a rare disease. Although some small progress has been made since my mother died almost 30 years ago, it remains the most aggressive type of breast cancer.

It is estimated that between 1% and 5% of all newly diagnosed breast cancers each year present as IBC; because of its rarity, it is listed with the Office of Rare Diseases at the National Institutes of Health.[1] While the number of cases of IBC is relatively small compared with the overall number of breast cancers, it is still a substantial number compared with many other rare tumor types…We cannot use the small number of cases as an excuse for the lack of clinical trials; rather, we should view it as a mandate for making novel treatment strategies available to all patients with this diagnosis.

via Have We Made Progress in Inflammatory Breast Cancer? Not So Fast – Cancer Network.

IBC patients’ median ages range between 45 and 55 years old. It occurs more frequently and at a younger age in African Americans vs. Caucasians. (See Inflammatory Breast Cancer Foundation – What is IBC? as well as IBC Support.)

I was 15 when my mother was diagnosed with IBC. Unlike other breast cancers, IBC typically does not present with a lump. The breast often looks swollen or red, a change that sometimes can happen overnight.

My mother’s treatment began with a mastectomy in our community hospital. In hindsight, I don’t know why my mother didn’t go to a university hospital–I can’t believe her small town surgeon would have seen many cases of IBC or even garden variety breast cancer for that matter. My parents went to the Mayo Clinic for a consultation. No one in our family had cancer. We didn’t know anyone with cancer. If you had a serious health crisis, everyone knew the Mayo Clinic was THE place to go.

But even the Mayo Brothers were no match for a disease where the five-year median survival rate is approximately 40 percent today. (It was worse in the 1980s. Today, IBC has a three-year survival rate of 42 % vs. 85% for non-IBC disease.)

Although 3-year survival from IBC has improved from 32% in 1975-1979 to 42% in 1988-1992 from the use of combined treatment modalities, women with IBC still have far worse survival than those with other types of breast cancer (all stages and non-IBC histopathological types combined [had a] 3-year survival [of] 85% in 1988-1992)
Source: http://www.ibcresearch.org/research/

From the community hospital, my mother went on to Lake Forest Hospital for in-patient chemotherapy. My older siblings were away at college leaving only my father two brothers and me to visit my mother in Lake Forest and remark on the amenities offered in a rich person’s hospital. (Mothers recuperating from blessed events could order lobster and there was a grand piano by the flight of stairs that led to the maternity ward.)

I hated going to visit my mother there. The nurse’s station had stern notices warning visitors against sitting on vacant beds. As we walked down the hall we would sometimes hear retching or terrible groans emanating from other patients’ rooms.

Our travels also took us to Lutheran General and Northwestern. I can’t remember where my mom had radiation–maybe at Lutheran General. There was a nurse she really liked at Northwestern–a very friendly young woman.

My father went to some of my mom’s appointments, especially if she were trying something new or meeting a new doctor. But most of the time my mother, who didn’t drive, asked which ever child was with her to remain in the waiting room while she saw the doctor.

My family in August, 1975. Nulliparity obviously wasn't a problem.

Oncology regimens have improved dramatically since the early 1980s. In my recollection, my mom’s treatments were on par with Civil War battlefield amputations. I think she had a radical mastectomy–which is no longer done. Today’s anti-emetics didn’t exist–my mom would throw up for days when she was having chemo. Later, when she had radiation, her skin was broken and oozing and her back–either because it was burned or itching or both–was a constant torment.

When I went for radiation treatments last year, I was terrified. I remembered my mother’s agony, how she would beg us to rub her back and how we did it so often for so long that we eventually rubbed a huge hole in the old navy blue cardigan she used to wear.

Thankfully, I suffered no side effects from surgery, radiation or other treatment. (I don’t have IBC, I have run-of-the-mill ER/PR+ HER2 NEU- breast cancer with a low volume of bone mets.)

In those pre-Internet days, there was literally nothing for women with IBC or MBC. General breast cancer information was restricted to large libraries or a few pamphlets from the cancer circuit rider AKA an American Cancer Society volunteer.

“In the mid-1970s, breast cancer was perceived very differently than it is today,” writes Barron H. Lerner. “There was no National Breast Cancer Coalition or Race for the Cure that encouraged women to talk about, and raise funds to control, the disease. Indeed, it was only in 1974 that breast cancer came out of the closet, with the highly public diagnoses of First Lady Betty Ford and Happy Rockefeller, wife of vice-president-designate Nelson Rockefeller. “

In the early 1980s, breast cancer was not daytime television fodder. “Mastectomy” was not a topic Merv Griffin, Mike Douglas, Phil Donahue or Judge Wapner broached. But in the early 1980s, it seems we had a perfect storm of launch vehicles for breast cancer awareness: Susan G. Komen for the Cure was founded (1982); Lifetime TV went on the air (also in 1982); and Oprah made her nationwide debut (1986).

You know what need now? How a little less awareness and a whole lot more UNDERSTANDING? Most breast cancer stories in print and on television make Horatio Alger Jr. sound as subtle as James Joyce. With luck and pluck, the brave breast cancer heroine carries on and ultimately kicks cancer to the curb.

Those are good stories. But that’s not my story.

Last November, I attended a panel discussion called “Many Faces of Breast Cancer: Living with Advanced Breast Cancer,” one of a series of national events AstraZeneca sponsored.

Dr. Sandy Goldberg, a nutritionist and weekend health contributor to NBC Channel 5, moderated the discussion. She told us she had experienced “everything you saw on the tape” referring to an AstraZeneca video featuring three women with metastatic breast cancer.

This set off enraged whispers in my row. Dr. Goldberg seemingly had an early stage cancer discovered in 2000. She did a 14-part, local-Emmy winning series on her breast cancer in 2002. But she apparently does not have metastatic breast cancer. It’s not clear what treatment she had, but at any rate it would seem her treatment ended at least six years ago. In 2002 she launched the Silver Lining Foundation to provide resources to those uninsured and underinsured individuals, often women of color.

According to the foundation’s 990 form, Dr. Goldberg receives a salary of $73,750 or 27% of the net revenues; $96,000 or 36% is spent on mammograms. The rest is spent on other administrative costs like rent, professional fees, salaries and benefits for those other than Dr. Goldberg.

The next day, we saw a student journalist’s online report. “The attendees wore mostly pink,” according to the student. “Some stuck to understated pink handbags or pink ribbons pinned to their lapels, while others celebrated in head-to-toe pink ensembles. They swapped stories, hugs and tears until the expert panel took the stage for the evening’s conversation.”

I spoke to six MBC women before the event began. We were all wearing earth tones: brown, black and perhaps olive green. None of us had any pink accessories. No pink ribbon pins. No one in my group hugged or cried and I observed no such carrying on as I looked around the room. I did see one elderly lady wearing a track suit which may have had pink stripes.

We are women with an incurable disease. Nothing said at this meeting offered any great epiphany. Maybe people were excited about the free food, but I found nothing to celebrate and there were certainly no high fives or fist bumps being exchanged in my corner.

Why would the student write something if it wasn’t true? She probably did see a couple of friends hugging. But, perhaps more likely, people have an idea of what breast cancer and breast cancer patients should be. They don’t like to let reality get in the way of a warm and fuzzy story.

We thought the presentation was going to focus on MBC. It didn’t. We complained to the organizers in person and later in writing. We felt brushed off.

Last October, my local paper featured a breast cancer awareness advertising section. All of the women profiled belonged to the “Treat it and Beat it” sorority beloved of reporters writing about breast cancer.

There was not a single word about recurrence. And yet, until a woman dies
of something else, there is always the possibility her cancer can come back, even if she was successfully treated for an early stage cancer and even if she completed her treatment as long as 25 years ago.

The special section had no insights for MBC women. The only oblique mention of Stage IV concerned a golf tournament named after a woman who died. Beyond the time, place and funds raised, we learned nothing further.

The day after Elizabeth Edwards died, “Today” show host Matt Lauer and Dr. Nancy Snyderman, NBC chief medical editor, recapped Edward’s cancer experience. Noting that Edwards was diagnosed with Stage 3 breast cancer in 2004, Lauer asked Snyderman about Stage 3 survival rates.

At no time, during their discussion, did Lauer or Snyderman mention that Edwards entered the metastatic ranks in 2007 and, in fact, died from metastatic breast cancer, AKA Stage IV.

Snyderman made it sound as though Edwards somehow died of Stage 3 breast cancer.

As if to avoid alarming Stage 3 women, Snyderman warned them not to compare their situations to Edwards’. She offered no such comfort to Stage IV women.

As the interview concluded, the doctor stressed the importance of mammograms and early detection. She said that the real issue is that we are still trying to figure out what causes breast cancer.

No kidding.

As we’ve previously observed, women with MBC literally don’t count. Some estimate that there are 160,000 people living with MBC in the U.S. The reality is we don’t actually know how many of us are out there.

“One hundred and sixty thousand is an estimate only,” author and advocate Musa Mayer told Elaine Schattner last year. “Nothing more definitive is available,” she said, explaining that because the NCI and SEER database record only incidence, initial treatment and mortality data, what happens in between — in terms of recurrence and the exact number of women living with metastatic breast cancer — is undocumented.

“It is as if these metastatic women are invisible, that they literally don’t count,” she indicated. “And when we don’t count people’s needs, we can’t provide or plan for them.”

Why I am doing this? Because I refuse to be invisible.

I will be seen and heard.

I will speak up and speak out.

I will make a difference.

Two of my nieces with their grandmother's high school self portrait.

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